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  • StrongwomanStrongwoman Peer Support Vol
    @GloHo
      The sitting in the "unknown realm" is so difficult for all of us. I mind plays out a million different scenarios and won't shut off.  
      I found this quote in the book entitled "Being Mortal" that I resonated with me: "The choices don't stop however.  Life is choices, and they are relentless.  No sooner have you made one choice than another is upon you."
      
    I feel that is so true for many of us.  Just as we get a handle on one thing, another pops up and we have decisions to make as to "what next" and "what will that look like".  It is very difficult to sit and wait and watch our loved ones do the same.  I don't believe there is any "one" answer how to do the "sitting and waiting".  All I can tell you is this (which you probably already know), currently there is nothing you can do to change the outcome.  You first must have your answers and then you will be able to make your decisions going forward.  Know we are all there with you and understand what you are going through.  Vent, vent, vent if you need to.  It is a safe space to do so.
      I will be looking forward to hearing your update when you are ready to share it.  In the meantime, find something you immensely enjoy and DO IT!!!  Put a smile on your face and embrace "what is" for now.  Hugs  <3
  • jiselle16jiselle16 Peer Support Vol
    @Ele I'm so sorry to hear of your diagnosis. I too was diagnosed in my 30's. You are certainly welcome to reach out to me if you have any questions. There's a group of us "young survivors" that meet monthly on Zoom as part of Ovarian Cancer Canada's "Teal Tea" program. If you are interested, you are welcome to join us! The next one is on December 14, and you can register here: https://ovariancanada.org/Events/Find-Local-Events/2022/December/Teal-Tea-December-14-2022
  • @GloHo it's sure been a roller coaster for you.  It's no wonder your mind is racing. It will help once you have a plan but until then try to occupy your mind as best you can.  There's no point in running scenerios when you have no control right now. Once you're back in treatment you can focus on that and recovery.  I've been where you are four times in the past six years and back in treatment once again. I try to stay focused on today and no more than that, although right now I'm cheating thinking ahead to Christmas and having my whole family here.  So far I'm in sixth year of treatment and learning to live quite well with cancer that will never be cured.  I wish the same for you.  <3
  • Update...
    Had an appointment with my oncologist the other day. The cancer is NOT in the lymph nodes (PHEW!). She has diagnosed me as platinum-resistant and has recommended Caelyx+Avastin treatment. Unfortunately, due to an increased need for chemo services (so sad), I am not able to begin treatment for two weeks. I am a little anxious about potential side effects. I try not to worry about things that are out of my control - I will deal with whatever comes my way when it happens.

    The Dr has suggested that I begin the magic mouthwash regime prior to chemo and aim for at least 4 times per day during treatment.

    Does anyone have any stories to share regarding mouth sores during treatment and what did or did not work for them?

    Does anyone have any stories to share on hand/foot syndrome and what did/did not work for them?

    Does anyone have any suggestions on safe skincare products to use? Shampoo, body wash, body lotion, hand lotion, foot lotion, etc. There are so many chemicals in skincare products it's scary. I have found a site that rates products by ingredient which has proven to be somewhat helpful...but I have not come across a 100% safe product/brand to use. All suggestions would be very much appreciated. 

    I will use the search engine to try to find some answers, but if anyone hasn't posted their stories yet, I'd be very interested in hearing them.

    Thank you all. Your continued support and encouragement have been a blessing.

  • StrongwomanStrongwoman Peer Support Vol
    @GloHo
      I am so sorry to hear of your breast cancer diagnosis. As if one is not enough eh?
    As far as skin care products here is what I used or am still using: for no hair-Baby Shampoo and Aveeno moisturizer on my scalp after bathing; current body cream-Cerave Moisture Cream and for my face--Dr. Jart+ Ceramidin (bought at Sephora); for mouthwash--I know it suggested to either use baking soda and water and/or Biotene.  I hope any of this helps you.  I, myself, am quite sensitive to products and have found these all safe to use and I have my elderly Aunt using the same body moisturizer cream now and she likes it and is not having any issues.
    I don't have any personal stories/experiences to share with you but from reading I have seen that there are some medications that are used dually for both breast and ovarian cancers but can't recall which ones, for what types etc.  
    I do hope that your side effects are minimal and if not that you make the choice that is "right" for you and you live the best life you can have to interact with family and friends.  
    I am sure some ladies will comment soon as per treatment and options etc that they may have had in similar situations.
    Tough for sure and we are here for you!
  • StrongwomanStrongwoman Peer Support Vol
    @GloHo
      Apologies, apologies.....my mind is working beyond me today.  You are NOT the lady with the breast cancer and I apologize for the slip up.
  • @Strongwoman
    Hi. No problem. I appreciate your suggestions. The more info I have the better to make an informed decision.
  • @GloHo I am just off 13 cycles of Caelyx/Avastin.  When I went on it I prepared for the worst; that being stories I heard about mouth sores and foot and hand rashes and sores.  Well, a great example of how we all respond differently.  I had none of what I expected; just a constant sore throat and a cough.  That said, the hands and feet were constantly slathered with a cream my oncologist recommend called Udderly Smooth.  Walmart carry it and a jar is about $6.  I've never had softer feet or hands. The feet I did every morning and before bed (with socks after to help the moisture to sink in and keep my bed sheets from getting ruined. As for my mouth, I gargled periodically with warm water and baking soda to soothe the sore throat.  The cough I still have but it's slowly disappearing now. 

    I was lucky tolerating the drugs probably better than most.  But I have heard stories that would cause me to prepare for the worst and hope for the best.  Good luck. The combo did keep my cancer from progressing for almost a year before we saw signs of progression again.  Now I'm on Gencitabine and hoping for a clinical trial that matches for me.  
  • @Fearless_Moderator
    Thank you so much for your response. I have also been fortunate to have had minimal side effects so far...but I have not had this combo yet, so tolerance is unknown. I was actually out today to stock up on some products in preparation for the worst. My poor husband had to endure two hours of me trying to find the best and safest products. I will have to get over to WalMart though and pick me up some of that Udderly Smooth cream, it sounds wonderful!

    I am sorry to hear that Caelyx/Avastin has run its course for you. I was very intrigued that there is another drug that can follow. I would welcome any info on how you are doing and tolerating that drug. I expect that will be the next step for me and am just grateful that there is another option. And I thank you for continuously improving my spirits with your experiences and information that is so valuable to me!

    I am also trying to find a clinical trial that works for me. I am fortunate that I could participate in trials conducted in three different centers, so I'm hoping that will help open the search to more trials than I would get locally! 

    I will be thinking about you and have my fingers crossed that you find the trial that fits your needs.


  • @GloHo i myself was also on caeylx/ Avastan for about 6 months. I used the udderly cream with 20 percent urea. But i had to order that one from walmart. I unfortuanetly about 6 weeks into treatment got the mouth sores and foot syndrome. My hands did good until towards the end were they only got a little red and swollen. My tip is i took off any rings just in case i did get swollen hands. I did find 1 cream though better than udderly cream at the end of my treatment. By accident as i was waiting on my order to come in,delays, of course, i picked up "Eucerin complete foot repair that had 10percent urea". This cream seemed to help alleviate the redness of pain faster. I did also get pretty severe mouth sores which my oncologist gave me magic mouth wash where i swolled it, but also prescription of fluconazole which helped. But not everyone will experience the same side effects. They did have to reduce my caeylx though. My ct showed great improvement hut during the next few months my ca 125 started to slowly climb. My oncologist would have kept me on it for a few more sessions,but she said but was concerned my side effects of my feet and hands would continously get worse. I am myself now on the gemiticibine and Avastan. My oncologist has decided to keep me on Avastan for a few more sessions with the gem as well. Oh also i bought a few hand and foot size gel packs and kept in freezer. As soon as i started getting the bit of stingy burning pain after my first bad foot syndrome where i had trouble walking, it hurt, i started to pack on  those ice packs while in bed each night after my first bad symptom. And those with the cream helped the symptoms to be only mild towards the end. But with luck u will not get any symptoms fingers crossed. Like each person doesn't get all symptoms. Hope these tips i used help as well.
  • Hi @Eileen

    Thank you so much for all of the suggestions and tips. I am trying to be as prepared as possible. I have been out and about scouring the skin care aisles in various stores throughout town. Even if I don't "need" them, it will give me an excuse to pamper myself...something I really don't do as often as I should. Thanks again.
  • I was diagnosed at age 62 with Stage 3 ovarian cancer and underwent a hysterectomy and debulking December 2021. Cancer has pretty much ruled my life this past year as I have visited the hospital more than 40 times for surgery, treatment, testing and care.  After every chemo treatment I donate to gynaecology oncology research to honour the nurse or doctor who cared for me that day.  These tribute gifts ensure medical staff are recognized for their expertise and compassion, and I am happy to create a legacy that benefits women who follow in my footsteps.  

  • hi everyone! My name is Ally, i was just recently told the mass that was thought to be a cyst or fibroid was actually ovarian cancer, a rare type Adult Granulosa Cell Tumor. So rare that there isn't much about it.
  • StrongwomanStrongwoman Peer Support Vol
    @PurpleDolphin
      Hi Ally and welcome to our group. I am sorry to hear that you are going through this.  How recently did you find out? Have you been informed of what treatment protocol is for this as of yet? How are you feeling about it all?
     I, too, had not heard or read about this type so I started researching it a bit.  It sounds like from what I have read that it is similar to LGSC in the fact that it is a slow growing or indolent type of cancer. Do you know what Stage it is at?
    This is not to diminish what you have in any way it is to hopefully provide you with solace that there is another type out there that it may be similar to in some ways. What I did read was that it may be treated with radiation and I don't know if that is later or something done sooner.  So, I will say this.  Write down all your questions no matter what you think of asking them.  Some, you may come across the answers yourself and if you do, great, just verify your info with your team/oncologist. You can also search this site to see if anyone else has had this by typing it in the search bar.  I did read somewhere late last night it can be referred to as another name as well so try that as well in the search bar. 
    If you have any general questions for now, let us know and we will do our best to answer them or guide you to where you might find those answers.
    If you have not already, you can order a copy of By My Side which can be sent to you in either digital or printed format and is FREE!  Here is the link: Ovarian Cancer Canada - Support and Resources (ovariancanada.org)
    Today at 1pm we also have a Teal Thursday Chat session.  All you have to do is click on it at 1pm to join.  It is written format and you have to hit your refresh button to see new dialogue from members that has been added to any conversation.  
    There is also a support group depending on age of yourself as well. There is one for young survivors specifically.  
    We are here for you and that is all of you whether that means a good day or a bad day emotionally, mentally or physically.  
    I hope some of this information helps and if you can, join our group chat today.
  • @GloHo my current course of treatment is a dose of Gemcitabine once a week for three consecutive weeks and one week off.  Although there's the usual skip occasionally where blood work doesn't support a treatment like my last one.  I started this a month ago, had two weeks work and my platelets torpedoed so we skipped a week for them to recover, which they did, and had my third treatment of cycle 1 yesterday.  Friends who also lost efficacy with the Caelyx/Avastin combo are now back on Taxil (I can't take it because I'm allergic) and there may be other drugs they can use to guy some more time; each of us being different in our needs.  I do wish you luck with the C&A combo though.  I managed to get 13 cycles out of it (a fulll year) that was not expected so quite happy with the longer term result and hopefully I'll have a good response to the Gem.  Jan 7 for  a CT will tell I guess.   
  • @Jam what a lovely way to recognize the hard work of our clinical caregivers who's jobs can be pretty thankless.  I"m sure they so appreciate it.  And you've given me the impetus to think about ways I can ensure mine are acknowledged.
  • @PurpleDolphin I am so sorry to hear of your diagnosis and worse yet, a type for which there is minimal information. Strongwoman has covered many of the bases already but I'll also add:
    Open a discussion thread looking for Teal Sisters in our membership with the same type.  Just make the topic Looking for Teal Sisters with Adult Granulosa Cell Tumors.  It might flush out members with experience to share or start a small community for you. We did that about a year ago for Mucinous type and ended up connecting three or four of our gals.
    Also, I"m not sure where you're located but go to the Ovarian Cancer website under Resources and look for the appropriate contact there.  Their staff are extremely helpful and might be able to fill in the blanks for you on your type ;and let you know what research might be going on out there.  I expect it's sort of low on the list since the good news is it has a high rate of cure using just surgery and radiation for treatment.  
    Please do keep us posted as you move through your journey.  Your experience will help educate us and be very supportive to anyone else experiencing your type of OVC   Good luck with your journey...wishing it to be brief and fully successful. 
     <3 
  • @Strongwoman so I had many ultrasounds before deciding to get a hysterectomy cuz my period had gone wonky and then disappeared(minus the random spotting) 11-12 months before surgery. The scans weren't definitive of what it was so they were just saying it was a cyst or a fibroid around my right ovary. I had the cancer blood work done and it came back clean. The surgeon asked "if when I get in there, it looks suspicious can I take the ovary out too?" I told her to do what she needed to...surgery was on April 7th and my follow up was may 18th, my surgeon told me on may 18th it was cancer but since it was contained to that ovary she was confident that she got it all, she in fact got it all. So no treatment needed, just CT scans, blood work and check ups every 6 months.
  • StrongwomanStrongwoman Peer Support Vol
    @PurpleDolphin
      I am "over the moon" for you!  That is amazing news.  If you don't mind, as you find things out regarding your type of cancer, if you would post on this site like @Fearless_Moderator suggested, it would be great in case there are any other ladies out there that have this type as well.  Well, I am smiling I am so happy for you.  Have a wonderful Christmas and glad you found this site as well.
  • @Strongwoman I will try to remember to post...the only "symptom" I had that went away after surgery was headaches, I would wake up with one and go to bed with it and Tylenol didn't help, and due to other health issues I can only take Tylenol
  • @PurpleDolphin thanks for the update and like Strongwoman I'm doing the happy dance for you.  This is truly a special holiday season for you having been given your life back.  Just stay on top of it.  Your doctor did the right thing removing the ovary along with the tumor to be extra safe.  
  • @FEARLESS_MODERATOR Just read your profile.  I was diagnosed at KGH and now receive treatment at PMH.  I appreciate your comment about my donations to honour clinical caregivers.  I publicly talk about my donations to gynaecology oncology research at PMH hoping to inspire others to do the same.  Just this week, a good friend told me she is donating to cancer research in lieu of gifts to staff.  This is exactly the kind of action I'm hoping to inspire.
  • My mantra is Live Your Best Life.  It's amazing how your attitude changes when faced with a challenging journey.  This Christmas, I'm giving to family and close friends custom baseball caps that read Live Your Best Life to encourage them to embrace life to the fullest despite any obstacles they may face.
  • @Eileen
    Hi. Just returning to your VERY HELPFUL tips on dealing with HFS. As soon as I read your message, I removed my rings. So glad you put that info in there!! I am now dealing with HFS and mouth sores. It also came out around week 6 for me. OMG…it hurts. I have landed on cold water soak, slather with Bag Balm and take a Tylenol. This has proven to be the best combo with the longest relief of symptoms for me. My left hand is mild. However, my right hand has two fingers that are continuously swollen, tight and a bit discoloured. I ended up getting magic mouthwash for mouth sores. Numbs for a bit…so I’m hoping it will at least help with healing. 

    My Avastin infusion was delayed in the hopes that it will help the healing process. I also know that my Caelyx is going to be reduced. Will know for sure what route we’re taking when I see my Dr. I feel like the drugs are working, but won’t know until I get my blood work in a couple of weeks and my CT at the end of the month.

    I just want these symptoms to go away! How long before your symptoms resolved? 

    How is the Gem + Avastin working for you? I will need to research what’s next in case my Dr wants to swap out the Caelyx. 

    By the way, the 3-D crafts you did with the flowers and snowflakes are beautiful!! Thanks for sharing on Teal Thursdays. 

    Thanks again for your open, honest and helpful tips. 
  • Hi. @GloHo so sorry to hear u are getting the side effects. Yes the ring bit after reading about the hfs was my instinct to remove them. Because i had read your hands swell so glad i did so. My  caeylx was reduced as well. For me my first episode was pretty bad for my feet. It was too 6 weeks after starting. It was bed, couch for like 6 months. I still got the foot syndrome afterwards but but with the ice packs at night to help the burning it helped and i chose to stay off feet hence the bed couch. My hands yes started getting swelling and red in the end with swelling.

    I found that by the 3rd week of each cycle my feet were almost back to normal after each cycle. But would flare up again by end of first week after next treatment,  but staying off as much as possible and all the creams helped tremendously. My ct results were showing improvement in july.

     Oh for your mouth sores if they dont seem to be calming down. Or feel like they are getting worse. Mine did and my oncologist said i developed thrush and prescribed fluconazole for 2 weeks. I also found that cloreseptic spray worked wonders to help as well as the magic mouthwash. I used it at night going to bed.  For food i mushed my food in a bowl like baby food. And just put tiny bit in my mouth and used a bit of water to swallow it doen. My mouth sores i got on roof of mouth my cheeks and tongue so yep. Got creative. Because i said to myself really u going to throw this at me well nope u are not doing this to me ill fight this too. Lolol.

    Geniticibine and Avastan (I read that research showed that avastan and gem worked better together so this is why i asked my oncologist to keep me on.) You get a higher dose of avastan,  but you only get it on day 1 of each of your cycle. 

    My Ca125 levels did go up another 40 after cycle 3 but by cycle 4 noticed it started coming down again. Im on my cycle 5 now. Most of my cycles my platlet count went down and haven' t able to do the day 15. My oncologist put me on the injections that keep your white blood cell count up. I only do that though 48 hrs after each cycle for 2 days. But this time i asked my oncologist if we can just postpone day 15 instead of omiting it, because maybe this is why my levels are going up. So she agreed we will try that. But my ct in dec showed even more improvement. My next ct is going to be about mid March.

      I hope it continues to keep going down my CA125 because my oncologist mentioned that if it keeps rising, that my next few options are limited,  as they only have  20 percent of working. She said for me to reconsider maybe immunetherapy. But im very sceptical about it. My oncologist mentioned that we will discuss more in my next meeting. I did qualify before i started my gem and avastan but turned it down after looking into it. I decided it wasn't for me. Long story their.

    Im so glad u liked my flowers most of them are quite huge i really had a fun time making and designing the floral part. Im now working on my kitchen wall thinking about different types of daisies with vines and leaves. I have some greys and yellow and pinks and blue left over.
  • StrongwomanStrongwoman Peer Support Vol
    @Eileen
     That sounds like a wonderful idea for your kitchen and the colours would work well together.  Best of luck and show us some pics when you are done.
  • @Eileen
    Thank you for your suggestions and continued support and encouragement. Much appreciated! My mouth sores are getting better…thank goodness. One of my swollen fingers ended up getting a blister that has now broken. It was a tough skin blister, so not the open skin sore type. Have to watch it doesn’t get infected now. My left hand is now sore too. My feet, still very sore. I am staying off my feet as much as possible too. I have found that the soaking and Bag Balm provide the most relief 2-3 hours. Just using moisturizer doesn’t help at all for me. When I add Tylenol to my routine, I get extra relief for a longer period of time, but I only do the Tylenol once (or twice) a day or if I want to go out. It was very useful the other day because we wanted to go to Costco to pick up a small TV for our living room, which is where I am spending most of my time because the stairs are a no-go for me right now. I used one of those scooters at Costco so I didn’t have to walk around. It worked well. I really don’t want to stop Caelyx if it’s working. I am hoping we can try a dose reduction. But I’m not sure this will be cleared up before my next infusion, so not sure what the Dr is going to say!! Honestly, I don’t know if I want to go through this again. It is so debilitating and very painful. I have some thinking to do. I know my options are running out. I have been looking at trials as the next step, I was just hoping I would have more time on Caelyx/Avastin. 

    Can’t wait to see your creations for the kitchen!!
  • ToughAsTealToughAsTeal Peer Support Vol
    @GloHo I can relate to the decision for reduction vs debilitating pain.  My HFS was so severe, it really wasn’t an option. With the reduction, I did not experience anywhere near the same problems with side effects and, I could keep my outlook of “I am still getting treatment”.  🌻🌻🌻
  • @ToughAsTeal
    Thanks so much for sharing your experience. I have been on the fence of whether a reduction or stopping would be best. I am leaning to reduction, but I’m not sure if the Dr will even consider continuing. I see the Dr in a couple of weeks so we’ll see how I’m doing, see what the blood tests reveal and hear what the Dr recommends. Until then, I’ll just keep trying to manage all this stuff. I have also been very tired, but that could be a few things alone or together (pain, boredom, no exercise, disrupted sleep, inadequate nutrition, emotional exhaustion and/or a side effect itself)!!! Good grief! 🤣
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